Anti-MAG peripheral neuropathy

[Karjade]

Has anybody been diagnosed with Anti-MAG peripheral neuropathy? I was told I had this yesterday by letter from my Neurologist after many blood tests and nerve conduction tests. Must admit I am really scared as apparently it is a rare form of neuropathy. Has anybody heard of it?

[irishponies]

Hi, I have not heard of it but I will listen to you. What do you know about? I have had many many, many, many neurological tests to rule out a demyelinating disorder so I am familiar with some things. I was diagnosed with sensorimotor axonal polyneuropathy caused by ANCA-vasculitis and systemic sclerosis scleroderma. I suggest checking Mayo Clinic and Johns Hopkins web sites for info first.

[Karjade in reply to irishponies]

Irishponies. Thank you for your reply. My Neurologist wrote to me saying I have this but no explanation as to how it will be treated. I had never heard of it and I have only learnt what I know from Google. It is a rare neuropathy and, as expected, my GP and Rheumatologist have never heard of it so no help from them. My Neurologist said she will see me in Clinic soon and then I get sent an appointment for the 31st July which is six months of worry! I phoned her secretary to see if they can bring the appointment forward and was told that she is very busy so they could not! This is all so scary xx

[irishponies in reply to Karjade]

OK - here's an unsolicited tip: Call the neurologist at least 1 time a week to see if there is a cancelation. Maybe Tuesday afternoons or whatever. Be calm, they will have an earlier appointment but you have to consistently call. They have so many cancelations, it is a matter of calling at the right time. You will hear lots of "no" but 1 day you'll call & get a "yes". I got this tip from a scheduling person, it has worked! If they have an "earlier appointment" list, put your name on it. Be persistent but calm. You WILL get an earlier appointment. Are you in the US? Also I didn't read this because I am researching my own stuff but: gbs-cidp.org/anti-mag/ I hope this helps.

[Karjade in reply to irishponies]

Thank you so much. I am in the UK. I have phoned a few times and nobody ever phones me back! I have even phoned another recommended private Neurologist as I am willing to pay and spoke to his secretary . She had not even heard of Anti-MAG peripheral neuropathy and said she would have a word with the Neurologist to see if he can help me and she hasn’t even phoned me back! My next step is going to be my own GP and ask if he can try and bring my appointment forward. I am in so much pain and nobody seems to care! Thank you so much for the link - it is very helpful xx

[irishponies in reply to Karjade]

More unsolicited tips: give them 2 to 3 days to respond and then call again & stay calm, being the ultimate in sweetness & light; receptionists do NOT know diagnoses, try just saying peripheral neuropathy or what ever GENERAL thing you come up with especially if this neurologist is the recommended specialist. Call again but stay calm. It is not worth getting excited over yet, just keep calling. DEFINITELY speak with your GP and get their assistance. Keep in touch. If you ever need support, drop me a comment!

[Karjade in reply to irishponies]

thank you. I will wait like you said as I know they are so busy. I will make an appointment with my GP to discuss with him that is if I can get an appointment. I must admit I am worrying about the unknown! Thank you so much for your reply xx

[mariootsi in reply to Karjade]

I'm in the same position

[orange33]

hello just saw your post. I was diagnosed about six years ago with this condition I too was confused of what it meant. I have seen a neurologist several times but there doesn’t seem to be anything that can help with this condition.

I have had three infusions of rituximab whether it helped or not I can’t say I do have RA . I do not take any drugs for peripheral neuropathy only for my RA.

my neurologist was very helpful and understanding . my condition is very severe but this may not apply to everybody who have peripheral neuropathy.

I wish you the very best.

[Karjade in reply to orange33]

thank you for your reply. It sounds very scary and I cannot get an appointment to see the Neurologist until the 31st July and waiting all that time is just not fair. I am not on any medication either and I am in so much pain so I think it is time to take something so I can at least sleep. Has yours progressed in the last six years? I thought the infusions were to stop the antibodies fighting the immune system or something like that. I just want to see the Neurologist for her to explain exactly what Anti-MAG peripheral neuropathy is and what treatment I can take to help. Nobody seems to care and I just need some reassurance x

[orange33]

hello, I’m sorry to hear that you are in so much pain. It’s good to hear that you do have an appointment to see I neurologist. Maybe you could ring the clinic to see ifyou could slip in to a cancellation as you’re in so much pain. It may be worth a try.

The trouble with my condition PN and RA One Interact with the other, so it’s difficult to know which has given me the most discomfort.

my neurologist also organised a CT scan and MRI scan to make sure nothing else was causing the numbness and pain in my feet. I hope you have success with your appointment.

[Karjade in reply to orange33]

thank you for your reply. I was recently diagnosed with Raynaud’s as well and I am the same as you about which pain is from what condition. I have had another letter about my appointment with the Neurologist and they have changed it now to August! It is just too long to worry about all of this until then. I spoke to my doctor and he has not heard of Anti-MAG peripheral neuropathy either! I have no help from the medical profession and I have left messages for the Neurologist’s secretary to phone me and she never phones back! Not sure what to do next!

[Rachmaninov2 in reply to Karjade]

Just wondering if it might be worth putting your concerns in writing to the Neurologists secretary, or failing that you could contact PALS (Patient Advice and Liaison Service) to see if they could help.

[Karjade in reply to Rachmaninov2]

I am looking into going private with another Neurologist just for him to explain my results and what exactly this disease is. I just cannot wait until August without knowing what I am dealing with! I have also asked my doctor to try and bring the appointment forward as they would not listen to me. I have started a low dose of Gabapentin to see if that will help.

[Rachmaninov2 in reply to Karjade]

I can understand how concerned you must be and cost permitting going private could be a solution. I hope the Gabapentin kicks in quickly and works well for you. Was just wondering if there are any support groups for Anti-MAG peripheral neuropathy, although I realise it’s a rare condition.

[Karjade in reply to Rachmaninov2]

thank you. I searched and found a small group in France on Facebook for Anti-MAG peripheral Neuropathy with only just over 200 people. They may be a small group but it is quite active and informative.

[Rachmaninov2 in reply to Karjade]

That’s a step in the right direction, you must feel encouraged and not quite so alone. Hoping you get some good support and the information that you’re in need of.

[Karjade in reply to Rachmaninov2]

thank you. I hope so too as I do feel so alone with this and no help from the medical professional.

[Rachmaninov2 in reply to Karjade]

You still have the option to go privately if affordable.

[Karjade in reply to Rachmaninov2]

if I went for just a consultation with another Neurologist to discuss what anti-MAG is and all my results with advice it is £300. It is worth it otherwise I will worry until August!

[Rachmaninov2 in reply to Karjade]

Has this Neurologist confirmed that he is conversant with anti-MAG? If he has then it would be worth £300. How long would the consultation last?

[Karjade in reply to Rachmaninov2]

I phoned his Private secretary (she had not heard of it!) and she said she would ask him if he knew anything about it. She phoned me a few days later and said he does know about it. I have not done anything more about it until I my doctor writes and tries to bring the NHS appointment forward. I did not ask how long the private appointment was only the price. I have to go to the same area as the NHS hospital so the Private Neurologist has access to my results. To be truthful, I have had enough now and getting more anxious every day which does not help things x

[Rachmaninov2 in reply to Karjade]

So you have the choice whether to wait and see if the NHS appointment can be brought forward or not, and finding out how soon the private Neurologist can see you. If you feel you have had enough and the anxiety is making your condition worse it might be worth taking the private option. I would try to talk this over (the pros and cons of each option ) with family/friends before deciding.

[Karjade in reply to Rachmaninov2]

Thank you. I am waiting to hear from my doctor after he writes to the NHS Neurologist to see if he can bring the appointment forward. If he is not successful then I will have to go down the private route for a Consultation.

[orange33]

hello. Hoping you’ve heard from the neurologist’s secretary. I noticed you had some very helpful replies on here. my GP also hadn’t heard of Ani_Mag PN.

I really hope you hear something soon.

[Karjade in reply to orange33]

I have never spoken to anyone in the medical profession that have heard of it either including the Neurologist in our local hospital. I had to go to another hospital to see a Neurologist who specialises in peripheral neuropathy and she tested for this. If I have to go for infusions I am hoping I can go to my local hospital for this. I just cannot wait until August for this appointment as that is just too long so if I cannot see her sooner I may go Privately for a consultation with another Neurologist. I found a small group on Facebook for Anti-MAG peripheral neuropathy in France and they are a small but quite an active group. Have learnt a lot from them.

[BerkshireBear]

Anti-myelin-associated-glycoprotein (MAG) neuropathy is a distal, predominantly demyelinating, sensory or sensory-motor polyneuropathy most often developing in the context of an IgM-type monoclonal gammopathy due to monoclonal gammopathy of undetermined significance (MGUS) or lymphoplasmacytic lymphoma (LPL).

[Karjade in reply to BerkshireBear]

I have seen a Consultant in Leicester and had a lot of blood tests recently. I am definitely Anti- MAG positive without paraproteins so I am unable to have infusions. She said I have peripheral neuropathy without any known cause and to increase Gabapentin. Then she discharged me! I have been given no help or support and I am in so much pain. None of the copies of the letters I have received written to my doctor do I understand so I am just left! Now I have been diagnosed with Raynaud’s in my feet so life cannot get any worse! Thank you for your reply.